#chronic conditions

[tofu-bento-box]

having comorbidities that contradict/contraindicate each other is so stupid man.

you have PMDD. every time you get your period you spend the week before on the edge of a major depressive episode and lose all hope for the future. unfortunately for you, you also have PCOS, which makes Hell Week entirely unpredictable.

so you try to stabilize and predict Hell Week via birth control. but wait! you have migraines with aura! all hormonal birth control is now contraindicated for you, because it increases your risk of death.

ah, well, fuck. okay, well, you have pcos and your hormones are out of wack, let’s get those back on track. but guess what! that’s hormonal birth control again! so your testosterone stays high, and you have chronic acne now.

well, okay, let’s leave the hormones alone. let’s just deal with the acne. however the high-strength acne prescriptions cause such bad birth defects that you are almost legally required to be on some form of birth control. can you see where i’m going with this?

okay, so birth control would “solve” all your problems at the risk of maybe making one thing worse. let’s chance it. oops! you’re now horrifically depressed for a third of every month—and not just that, but your migraines did get worse, and now you’re barely functional.

fuck fuck fuck, get off that. stop taking that. go get an MRI just in case. well, i hope you enjoy migraines, because for some reason that birth control experiment did lasting damage. but don’t worry, your MRI is completely clean!

just. comorbidities, man.

[milo-by-the-fishtank]

“You are addicted to not being in pain”

Uh…. Yeah, I think YOU would be too if you constantly hurt and dislocated your joints!

[spaghettimakesflags]

Long Covid Pride Flag - a syndrome characterized by the persistence of symptoms attributed to Covid-19.

[cripcoin]

Diuturnic / Chronic Illness flags

Diuturnic is a suffix for chronic illness and long lasting conditions.

The flags above are as follows

Diuturnic -> coming from the latin words Durus (meaning harsh, severe etc) and Diuturna or Diuturnum (meaning long lasting), this term is not meant to be a replacement use for chronic but to encompass all chronic conditions.

DolorDiuturnic / DoloTurnic -> the orange flag, representing chronic pain, dolor is Latin for pain. This includes all forms of chronic pain.

LangourDiuturnic / LangoTurnic -> the blue flag, coming from the Latin word Langour (meaning faintness, weakness, infirmity, feebleness, exhaustion), this term is meant to encompass all forms of chronic fatigue.

It is not required to use the created names to use the flags, you can simply call them alternative flags for chronic illness, pain and fatigue.

Our previous chronic illness flags:

Pain - fatigue

We are accepting requests for sub terms/flags under Diuturnic !

Tagging:

@sanguinaryfreaks , @hewasanamericangirl , @the-church-of-strabismus

[plural-affirmations]

Here's to systems who are physically affected by system functions!

It's not uncommon to hear of temporary ailments popping up as a result of someone's system doing... well, system things. Here's to who experience this!

Shoutout to:

Those who can tell when they're splitting based on how exhausted they feel

Physically disabled and chronically ill individuals who have an uptick in symptoms for their condition around times such as splitting, forming, fusing, etc.

Those who get headaches, migraines, feel lightheaded, get vertigo (dizziness), and so on

Headmates who have different experiences than the rest of their system (e.g. colorblindness, visual impairment, hard of hearing, etc.)

The ones who get mental conditions that have a physical effect (such as a racing heartbeat for anxiety, etc.)

And anyone else I missed!

I relate to you very strongly! It's perfectly acceptable to be affected by things differently than some others might be.

For a little personal anecdote, I (the host) experience the most hearing problems out of everyone in the system. We're not sure why? The body has Meniere's disease, but I seem to get the worst manifestion of it. Anyways!

I hope you all have a lovely afternoon!

🖤💜💙💚💛

[ladyfarona]

Let's see what's on my todo list...

Wake up tired ✅

Go to bed tired

[wilsons-three-legged-siamese]

Today marks my 7 month anniversary for my cardiac surgery. So id like to share my experience with SVT in honour of the doctors who have saved my life.

Also just in case people are interested!! Because honestly, its a very interesting condition.

As i said, its been 7 months since my surgery. Im forever greatful for my surgeons. Since its 7 months, i now experience no palpitations, which is awesome. Before it happened maybe daily? I feel non now. Its the best thing ive ever done.

Right, let me explain SVT first.

SVT stands for supraventricular tachycardia. Its when theres an additional pathway in the hearts electrical circuit, leading to the heart beating abnormally fast for an hour up to a day at a time.

Anyway.

I was diagnosed at the age of 4, in the US. I was visiting my grandparents and i was sent ro multiple hospitals to get diagnosed. A specialist took me in and finally got me sorted. Ever since then, it has been a struggle.

Ive been on adenosise a a lot, sometimes a few doses at once as i was almost immune to it. Ive been in perri arrest (stage before cardiac arrest) around 3 times. I have been sedated once. I have a massive fear of neddles because of my experiences with them in hospital. I have been pinned down tons of times.

My the age of 8, i was on the strongest medication with the highest dose with two medications. Its very dangerous to take them both together, that now severe my condition was. A year ago, i was taken in by the famous hospital in london under their cardiac unit. My cardiologists finally decided to give me the cardiac ablation.

The cardiac ablation works like this:

9 slits are made near the groin, 5 on one side, 4 on another. Catheters are inserted into the veins and arteries up to the heart. They put you into an episode of SVT to find the extra parhway. Once found, they either burn it or freeze it off, scarring the heart safely. Everything is removed with no stitches at all.

My surgery went fine, textbook easy. I have 4 tiny scars near my groin/on my thigh. I experiences daily heart palpitations at resting for about 6 months, which is normal.

Recovery was easy. It was extremely hard to walk, thats all. Legs were extremely weak and your heart just feels a bit funny, with the beating i mean. I could definitely feel a difference. I just couldn't be on my side for the first few days, making sleeping uncomfortable.

Theres my experience!! It was a journey definitely, but im so glad i overcame it <3.

[myalgicencephalomyelitiscfstom]

[tumble-tv]

Went into my mom's room to sleep in her bed because im in a lot of pain and the shared body heat helps, plus she has a better mattress than me. I asked if I could stay with her and she said yes, but she was in the middle of the mattress and didn't move and there was almost no space for me. I just went back to my room and cried. I'm so sick of this pain.

[nazmazh]

Something that's been ruminating in my mind for the past couple of days:

There's a frustrating doubly-performative aspect to being chronically ill/having a chronic condition.

To those that you don't interact with all-that-frequently, it can seem like you're not actually that compromised by your condition. After all, you interact with them for some times of some days, and you seem mostly perfectly-fine during those interactions. Because you're putting on a brave face and pushing through things, or because you know you'll pay for this activity later, when you're away from everyone else and have the quiet time to recuperate. That you'll be forced to spend recuperating.

When it comes to people who are in charge of officially assessing you and your capabilities, especially, you may have to play up just how debilitating your condition is, lest they officially suspect you of faking, or of being capable of more than you can sustainably handle.

But this also applies to basically anyone who might cast a judgmental glance your way, or spread a rumour/opinion that you're "just lazy" or however they choose to frame it (which may also reach back to official people and influence their assessments of you, as an added layer of concern). Even without official consequences, it just fucking sucks to be considered a jackass/layabout/etc. by people, y'know? Especially unfairly.

MEANWHILE,

For the people closest to you. Who might see you on your day-to-day average, bests, and worsts; those whom you can't really hide your worst struggles from - It might seem to them that you're "not trying hard enough", "not pushing yourself to do better", and "letting your condition win" or whatever framing they're going to apply to it.

You know - How dare you not feel up for getting up and walking laps all afternoon? How dare you want to sleep on a schedule that your body doesn't fight against and gives you peace and quiet with your waking hours? How dare you not pitch in more right this very moment in this very specific way, without any warning/prep time?

After all, you're not doubled over in screaming agony. You're out of bed. You've even talked with people, laughed, and not been visibly abjectly miserable all day - How can you possibly claim you're not doing perfectly fine today?

(And if you are doubled-over in bed in agony - You probably are playing up your symptoms as an excuse to be lazy, aren't you?)

So, to those who don't know you, you might have to act "more ill" to fit their definition of what a chronically-ill person must be like. And to those you do know well, you might have to act "more ill" to reflect how actually unable to do things you are, or act "less ill" to avoid seeming like you're taking advantage of any generosity they might offer or to seem like less of a burden and appease their sensibilities that you're actually "trying to get better". Like that's a thing that you have a ton of power over.

And like, yes, before someone comes in here and rants about it - Yes, I'm fully aware that getting up and doing things is better for you than just sitting around, if you can handle it. It's better to avoid atrophy. It's better to get some blood pumping and some airflow going. It's better to be social and not let that aspect of your life degrade either. But if doing so will drain you for days afterwards, yeah, you're going to want to be measured in what you do. You're going to want to avoid overexerting yourself just to meet their expectations.

It's all just so exhausting, really.

[tofu-bento-box]

being chronically ill is like having footnotes on your existence

[spaghettimakesflags]

Spina Bifida pride flag

[cripcoin]

Capitiuturnic

A diuturnic term/flag for those with chronic headaches and/or migraines, including those with full body, periodical, severer or moderate pain from headaches/migraines, regardless of when or how often they happen be it monthly, weekly, daily, having no pattern and so on.

This includes anyone who's undiagnosed or doesn't know what it is beyond constant headaches/migraines regardless of what form it takes.

Etymology:

Capiti -> comes from capitis, Latin for headache.

+ iuturnic from diuturnic.

Requests are open!

[sillyspoonie]

Asthma, What is it?

Alt text: Asthma is a common lung condition that occasionally causes breathing difficulties. Asthma is caused by swelling (inflammation) of the breathing tubes that carry air in and out of the lungs.This makes the tubes highly sensitive, so they temporarily narrow. It may happen randomly or after exposure to a trigger. Although asthma can normally be kept under control, it's still a serious condition that can cause a number of problems. This is why it's important to follow your treatment plan and not ignore your symptoms if they're getting worse. There's also a risk of severe asthma attacks, which can be life threatening.

More info: https://www.nhsinform.scot/illnesses-and-conditions/lungs-and-airways/asthma/

[alfredpennyworththecat]

It's genuinely terrifying sometimes. The fact that if anything medically happens to me, there's really nothing I can do. The fact that my hospital visit months ago racked up to $20,000, with only an EKG and blood test done and nothing more.

Genuinely, if I end up diagnosed with any long-term conditions that needs active care (that I don't have the luxury to ignore like I do now for my several other conditions), I actually may leave my country, whether I want to or not. I cannot afford insurance. And I cannot afford $20k hospital bills to save my life.

I'm in pain daily. I worry about waking up and not being able to go to work, because I can't miss my job. I'm limping while I work. I've been grabbing my left chest in pain. I'm scared of my whole body in pain again for reasons I have no idea why. The OTC pain meds don't work for this pain. I lose my breath for no reason. This has been going on for over two weeks now.

But it doesn't matter, because I cannot afford to see a doctor. You're only worth saving in the US if they can make a buck off you. Your health is a product you buy in the US. Not a necessity.